National Transplant Week 2012: Law of Averages

Today is a little bit of a milestone for me. It is two and a half years since I became ‘active’ on the double lung transplant list.

Here is a table (created with data from NHS Blood and Transplant) detailing the average waiting times for transplant of various organs (for adults).

Organ	Waiting time to transplant in days
Kidney	1110
Kidney and Pancreas	217
Heart	184
Lung	519
Liver	149

So, I suppose you can say I have had an ‘above average’ wait for a lung transplant so far... but many people have to wait even longer than I have waited so far! 

I knew from the start that just because I was able to be listed for transplant, it does not guarantee you a transplant. In fact, three people die each day waiting for their transplants. The surgeon I met during the initial assessment process made it explicitly clear that it is always a possibility that I may not get a call. So whilst being on the transplant list gives me the hope of a second chance at life, I still live my life very much to the ‘max’ – doing as much as I am physically able to. 

I know I have talked about the emotional side of deciding to opt for a transplant and embarking on the long assessment process that it demands, but I want to stress again that it isn’t a decision that is reached lightly. It involves much discussion and counselling and the fact that I will be swapping one demanding treatment regime with another, the difference being however, with a successful transplant I will have so much more energy with which to tackle these challenges! During my period of waiting, I have seen several friends lose their battle with Cystic Fibrosis. Some have been waiting for transplants and some have decided that a transplant is not for them. Each time this has happened, it has struck me down quite hard, but it has also made me more determined to try to keep as positive as I can and to keep myself as well as I possibly can so should I be lucky enough to receive a transplant call which is NOT a false alarm, I would be fit enough for the surgery. 

To conclude today’s mini blog I would urge you all to please keep spreading the word far and wide about signing the register and talking about your wishes with your loved ones. I must extend a big thank you to my friend Hannah who’s birthday wish today was for people to sign up to the register! What a great idea!! 

National Transplant Week 2012: Is age an issue?

It’s National Transplant Week! I make no apologies for filling various social network feeds with statistics and information regarding organ donation. The word really needs to be spread far and wide about this issue! I would also like to thank my village shop for putting up a poster in their window and displaying leaflets for National Transplant Week! 

I aim to write a short blog each day, with a little fact or two regarding organ donation. Today I am going to talk about age. 

I have heard many people say that they feel that they are too old to sign up to the organ donation register to donate their organs after their death. This is not always the case. NHS Blood and Transplant say that ‘older people are less likely to be able to donate as many of their organs as younger people, as some organs become less suitable for transplant as people age’. However, organs from people in their 70s and 80s have in fact been transplanted successfully! The oldest recorded cornea donor was 104 years old. The oldest solid organ donor in the UK was 84 years old. Recently, an 83 year old man from Hampshire became the oldest person in the UK to make a live organ donation, he was an ‘altruistic’ kidney donor – he will never meet the person who received his kidney. 

Ultimately it is down to the transplant teams to assess organs for viability for transplant, so PLEASE sign up, no matter how old you are (or feel!). And don’t forget to tell your loved ones what your wishes regarding organ donation are after your death!!!

Staying Positive...

As many of you know I had a routine clinic appointment two weeks ago which was pretty standard and my lung function was stable which is always good! However, there were a few additional issues that needed resolving the first being my sleeping problems... Being on a non-invasive ventilator overnight is both a blessing and a nuisance. On the positive side I am adequately ventilated so do not wake up with headaches and wake feeling generally rested. Conversely, it can cause me to really fill with air which leads me to become bloated and wake up with really painful trapped wind! This does pass though, with the help of peppermint tea! It also has a huge impact on my sleep (and consequently Luke’s sleep too!) so whilst I feel well ventilated after sleep, I can’t remember the last time I actually slept through the night. Rather than going straight for the hardcore prescription sleeping tablets I am going to try herbal over the counter remedies first and listen to audio books and so on. So far the herbal tablets do seem to be helping! 

Spring and early summer was really a very busy time for me and I was really grateful for this and all the distractions that it entailed. When the hustle and bustle fades however, I am left alone with my thoughts and the one thought that dominates all others is how desperate I am to receive a transplant. I know that I should focus on the fact that I feel generally well at the moment but I do panic and think that it doesn’t take a great deal to make me feel poorly – the slightest cold could potentially go to my chest and worsen my already poor lung function.  To keep my thoughts positive I’ve been thinking a lot about the developments in lung transplantation and the research that has been undertaken (and is still ongoing) to widen the quantity of lungs available for transplantation.  Firstly a procedure called, ‘Ex-Vivo lung perfusion’. To make a rather complicated and highly cutting edge procedure sound simple, this allows lungs that may have been classed as unsuitable, or perhaps ‘borderline’ for transplant a chance to examined out of the body and are, in essence, ‘reconditioned’. This is achieved by pumping a bloodless solution containing nutrients, steroids and antibiotics through them inside a protected chamber, outside the body. This research was even picked up by the BBC and they ran a piece on it – which I was asked to participate in! For those of you who have not seen the news piece, here is a link...BBC Ex-Vivo News Piece

Secondly, more transplants have been carried out using ‘donation after cardiac death’ (or non-heart beating donors). This is quite complicated to explain so rather than fill this post with medical jargon, a link which explains what ‘non-heart beating’ donation is, can be found here (Please scroll to the bottom of the page when the website opens). On both occasions where I had ‘false alarms’ for transplants, both potential donors were ‘non-heart beating’, therefore without the wider usage of this technique I would have received NO calls for transplant whatsoever. 

Another technique which has been discussed with me by the doctors at Harefield was transplanting the lobes of larger lungs into my body. As I am a small lady, with a lung capacity of about 4 or 5 litres, there is the possibility of having a lobe transplanted from a larger donor who perhaps has the lung capacity of approximately 7 or 8 litres. However, the lobe transplants would not necessarily be the preferred type of transplant as the surgery is inevitably more complex.

Whilst it is very positive that many developments have happened in this field, it is clear that so many more people need to make their wishes regarding organ donation known to their next of kin. It is National Transplant Week next week (9^th – 15^th July) and it is a real opportunity to take the time to discuss your wishes about organ donation with your loved ones. According to NHS Blood and Transplant, ‘Over 90% of families will agree to donation if a loved one is registered AND has discussed their wishes. This drops to around 40% if donation wishes aren’t known.’ This is a frightening discrepancy. I really implore you all to take time to discuss your wishes regarding organ donation! If anybody is interested in spreading the word about organ donation during National Transplant Week, the link below contains lots of downloadable posters, leaflets and web based materials to get the message out there! 

National Transplant Week Action Pack Link

My Best Friend's Wedding!

Over a year ago now, my best friend of 20+ years approached me and asked me if I would do her the honour of being maid of honour at her wedding to her then fiancée, Ed, this June. I of course agreed, as she was mine back in 2007 and I was so honoured to be able/alive to return the favour! Having been on the transplant waiting list for almost a year when Beth asked me, I was naively hopeful that I would have received my transplant by the time the big day came around! Well... things didn’t exactly turn out that way! Two false alarms occurred, but not a lot else! As the wedding crept nearer and nearer I began wishing for something that I never thought I would wish for... That Harefield WOULDN’T call! Please don’t think of me as stupid or worse still, ungrateful  - I would of course have trundled up to Harefield had I received a call, but when there is something so exciting and un-CF or hospital related to look forward to, it really makes a change! (Also, there would have been the possibility of the call being another false alarm which would have just added insult to injury!) 

Luke and I were very fortunate to be given access to free (and incredibly sumptuous, might I add!!) bed and breakfast accommodation within the farm on which Ed works and the wedding reception took place. I cannot begin to express my gratitude towards how accommodating people were to ensure that I could take part in Beth and Ed’s day. It goes without saying that I was nervous as to how I would ‘cope’ physically with the day but it transpires that I need not have worried! Aside from the fact that I was pretty well (by my standards) Beth and Ed’s family, as well as Luke and Kate (Beth’s other bridesmaid), did more than enough to make sure that all I had to do was be there for Beth, walk down the aisle and enjoy the day! Even with an oxygen canister in one hand I was able to do my maid of honour duties (the removal of the veil and being responsible for the bridal bouquet!)

Wedding Oxygen!

The bridesmaids and the bride!

The gorgeous happy couple!

Whilst my CF obviously limited my ability to boogie the night away on the dance floor and party into the small hours, the huge amount of support and loving care I received from my friends meant that I still managed to participate fully in Beth and Ed’s day. I was worried that all of my extra demands, such as machinery and needing a bit of an extra helping hand would somehow ruin the occasion (stupid, I know!!) However, that didn’t happen in the slightest, the wedding and the reception were beautiful, with a real atmosphere of love and happiness. I am completely thrilled for the new Mr and Mrs Bagshaw, everyone had an amazing day and although I was pretty wiped out for the next two days, I would do it all again in a heartbeat! Thank you Beth and Ed for including me in your special day!

I did it! 

An English Country Garden

After spending a wonderfully blissful weekend out in the garden, I thought I should post a few garden photos on my blog! Whilst it was very frustrating to not be able to help Luke out with much, I surprised myself with how much I could actually do... a bit of plant potting and some light weeding. It must have been the sunshine... It always brings out the best in me! 

The 'medow' before Luke set the mower onto it...

Nice grass, now to weed the wall border

Done! Except for a bit in the middle which was hiding a cute mouse and her pups!

Gardener Lukey... Handy with a pair of shears...

Needless to say, Luke was well and truly exhausted by the experience. The grass alone took 4 hours to cut as it had become so long! So the next day was spent planting our hanging baskets and relaxing with my family!

Mum, Auntie Pauline and Me - All sun worshippers!

Luke, Uncle Colin and Dad - Shade worshippers?? ;)

Ian, sporting a familiar hat...

I know this post may seem a bit short, sweet and somewhat random, but I have had such a lovely weekend and barely thought about my CF, transplant or any other such stuff so deemed it fit to blog about the small things that make life much more bearable!

IVs... Emergency Blood Tests and A Hen Weekend!

I apologise profusely for my lack of blogging... I usually tend to go quiet when I either ill or busy, I am happy to report that my current quietness is due to the latter and not being ill (well more ill than usual!). It has been a real blessing to be so busy largely due to a number of weddings Luke and I have been invited to. As well as planning and attending the hen-do of a very special friend of mine!  When the hustle and bustle fades however, I am left alone with my thoughts and the one thought that dominates all others is how desperate I am to receive a transplant. I know that I should focus on the fact that I feel generally well at the moment but I do panic and think that it doesn’t take a great deal to make me feel poorly – the slightest cold could potentially go to my chest and worsen my already poor lung function.

Therefore I thought that it would be an exceedingly good idea to get myself up to the Brompton Hospital as a day case and start a course of home intravenous antibiotics (IVs), to keep me feeling as well as I have been feeling and to ensure that I am really really really well for Beth and Ed’s wedding on the 9^th June (only 17 days to go!!!). I went up and started my IVs with very little hassle... my lung function was it’s usual low but steady self (Fev1 18%, FVC 45%), weight was a little down, but still acceptable, x-ray unchanged since last time, O₂  Saturations were a bit iffy, but eventually decided to climb to 89/90% which they decided was ok (for me!). 

After one dose we trundled home and commenced the usual routine of administering the IVs (Ceftazadime 3 times a day and Tobramycin once a day). I felt a bit grotty for the first few days, as they are pretty potent chemicals, I felt a little sick and tired. I had to send a Tobramycin level up to the Brompton before I took my 3^rd dose, to check that the drug wasn’t building up in my body and potentially causing damage. Having taken Tobramycin as an IV fairly regularly for longer than 10 years, and always had normal levels this was just another bog standard part of the routine. However, I got a bit of worrying news from the Brompton the day after I sent my Tobramycin level back to the hospital. The level that should be registered before the next dose (at least 18 hours after the previous dose) should be less than 1. However my level was 9, almost 10 times higher than it should be. I had to immediately stop the IV Tobramycin. The Brompton were very concerned as firstly, I am a remote patient, so I’m not at their fingertips to nip a quick blood test down to the lab and secondly they desperately needed to check my renal function as the high levels could indicate kidney damage as this would suggest why the level was so high; it was not being removed from my body efficiently. It was also mean that my other antibiotic would be damaging my kidneys further. Getting a blood test done locally is a very merry dance to lead!! I had to ring up my GP and plead for an emergency test, which they fortunately allowed me to do. Mum (aka Supermum) then had to drive me with the blood sample to the pathology lab in Winchester hospital so it could be tested and then the results communicated back to the Brompton. I am pleased to report that the test on Friday indicated normal renal function, thank God, but I am having it repeated tomorrow to ensure that it is still ok. The doctors are really unsure as to why my level was so high, so I’m not to continue with the IV Tobramycin and to just have it in it’s nebulised form (TOBI).

Currently I have to say I’m feeling a bit on the poorly side due to not being on any form of Tobramycin for nearly 5 days (and an incredibly hectic weekend)... But since being allowed to nebulise it again, I’m beginning to pick up again. 

All of this aside, I had a really lovely weekend... It was the long awaited and highly anticipated hen do of a certain Miss Beth Avis!! We had a lovely meal at ‘The Shapla’ restaurant in Alresford and then we spent the next day completely relaxing at Forest Mere Health Spa. The only thing to mar this lovely weekend was my STUPID portable oxygen unit.  As I have discussed in previous blogs, I have a Dewar of liquid oxygen which I use to replenish a small portable unit which I can take around with me. On ‘demand’ setting (which releases O₂ when I breathe in) using 3 litres a minute will last approximately 9 hours. Filling the portable unit is pretty simple – you push the portable unit onto the top of the Dewar and under pressure the liquid O₂ shoots into it and fills it. Once filled, you leave it to temper and then 20 minutes or so later you are good to go... Or so one hopes!!! Occasionally it misbehaves and I am not quite sure why it does this, but from time to time once it is filled, the portable unit will not dispense oxygen ‘on demand’ (or at all sometimes) meaning that my 3 litres per minute usage will only last about 3 hours.. Scuppering any hopes of leaving the house for more than that time! On Saturday, the night of Beth’s hen meal of course it decided to play up, but it wasn’t too much of a problem as I knew I wouldn’t be out for all that long... However, it really threw the spanner in the works for me when it decided to misbehave on the morning of the spa day... Firstly we filled it and then left it to temper, then after it still not working almost an hour after filling, and further time spent searching for the English language part of the maintenance manual, we were instructed to lay it on its back to temper. We followed these instructions, and suddenly about 5 minutes later there was a loud cracking noise from the kitchen... The liquid O₂ had completely leaked from the unit! As liquid O₂ is incredibly cold (it’s boiling point is approx -183°C) it had cracked part of the paintwork on the windowsill!! Thank goodness it was only superficial damage, and can be fixed with a bit of paint! So the unit was now empty! After a second attempt at filling, the unit was dispensing O₂ at a slow rate, we decided just to go. There was no way on earth I was going to let CF ruin Beth’s spa day, besides this, I was really looking forwards to it! Nevertheless, after much frustration and anguish, it started to pathetically dispense oxygen! Luke (my real life Superman) very kindly drove me to the health spa where I met up with the lovely hens and had an amazingly relaxing day! I was a bit deoxygenated as I’m meant to have a higher flow rate when I move around, but on the whole it was absolutely fine! 

I’m a little bit anxious about my blood test tomorrow; I’m really praying that the kidney damage hasn’t occurred after the last test. Despite this I am firstly really thankful to have such an accommodating GP surgery, as there is usually such a long wait for a blood test... Secondly that I have such a great carer in mum; she is willing (and sometimes able) to drop everything to drive me here there and everywhere when Luke can’t. Lastly, but by no means least, I have such a wonderful group of friends who take me as I am and wheel me here there and everywhere! I used to be so self-conscious about wearing my oxygen in public but now I really don't care about it... People will either accept me for who I am, or they won't! So whilst my life is difficult and trying, it could be so much worse, and I am so grateful that it isn’t!